Wondering Why...

Boo!

Hello you lovely people! Hope you are all well :D well where do I start… I went up to Great Ormand Street on Thursday 19th march to have my Antibody Rejection treatment and because I wasn't feeling well either, I was getting breathless walking, so i explained all to Helen and she said i have an infection because my lung function was quite down. I was started on IV ceftazidime and oral cipro, went home that Friday after my rejection treatment finished and after having trouble with my picc line which decided to snap in half whilst taking blood haha but they fixed it after 6-7 hours of trying. I decided to go college on Monday but I was very breathless walking around and had no energy at all so didn't go for the rest of the week, my nurse has been coming around a couple times this week and my lung function keeps dropping so I don't believe it's an infection but of course I listen to my doctors. I don't seem to be coping very well with the fact that I'm getting very out of breath again doing things, it isn't as bad as before transplant but loosing lung function so quick and being use to being able to do things again to not being able to walk up the stairs without having a break half way through is hard. There are people much more worse then me and are waiting for a transplant and I know what that feels like so I really don't know why I'm moaning but I just wonder.. why? why all this again, I haven't really had a break from it since I've had my transplant, best thing that ever happened to me and i will always remember and can't thank my donor enough but it isn't always an easy life after transplant but the best thing to do is get on with it :) I'm doing my lung function again tomorrow and hopefully it hasn't gone down again, if it has we are telling GOSH and hopefully they will do something about it and i'm ready to fight anything that comes at me! :) 

As always, thank you for reading
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The Tarka Walk 2015!

Hello!

Saturday was the day for the Tarka Walk 2015 which was a sponsored walk me and my family organised and the money raised will go to Live Life Give Life, it was a great day and around 100 people turned up to do the walk, there was a raffle which had some great prizes, we've already raised about £1000 so far and we haven't had everyone's sponsorship money in yet! A few friends that has had transplants came down for the walk too, one of my best friends Jess Paddock who i have mentioned before, Emily Icke and Neil Capener, they have all had double lung transplants like me. I only managed to do half of the walk but that was more then i expected to do. Jess did the whole way and she is only 5 months post tx, i'm so proud of her! i wouldn't of been able to organise it without my Mum, Dad, Step mum and Austin Wallas who has helped my family a lot with the sponsored walks we have done! in the night me, Jess, Emily, Neil and friends went out for chinese before we all said goodbyes, Me and jess went to see Harriet on Friday and i bought her a lovely friend stone to put on her grave, it looked beautiful, Harriets parents and little sister came to the walk and it was hard to hold back the tears but i loved seeing them.

Thank you everyone who came to the walk and theres still chance to sponsor me through my Just Giving page please click..  *HERE*. We are thinking of doing a summer fete next year so i look forward to seeing you all there! for now i shall leave you to some photos of the day…

Emily, Neil, Me and Jess

Dad Holding the Organ Donation sign

The Lovely Jane Hoare and her friend Heather holding the sign

At the start line. 

Me and my gorgeous mum holding the sign. 

My Childhood best friend and her family, basically my second family.

Harriters parents Greg and Helen and her little sister Imogen 

One of my gorgeous nephews 

My other childhood best friend and Kim a friend of ours.

Emily, her friend and Neil behind her.

As always, thank you for reading

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Goodbye Reflux, Hello Sloppy Food

Hey!

I hope you are all well! After Disneyland I came to GOSH to have my Antibody-Mediated Rejection treatment which all went okay, I was attached to the IV pump for 12 hours and then was allowed home the next day but on the way home I became quite ill and started to get a headache and was sick, I got home and Helen rang and said my Tacrolimus level was very high so I was to miss that nights dose and change the dose in the morning. I was in bed for 2 days because I could not move as the headache stayed the whole 2 days and I would just be sick, I felt better after a few days but my appetite hasn't been very good since, I went to my friends and tried to forget about feeling ill but the morning I woke up and didn't feel well again but mornings are always worse, this was pancake day so of course I had a pancake or 2 :P

Last Wednesday I came to GOSH because I had my fundoplication on Thursday, I went to theatre at 1:00pm and came around at 5 o'clock ish in a lot of pain and had a NG tube down my nose, I basically slept for the rest of Thursday and the whole of friday(i do that after any anaesthetic haha) I got out of bed on Saturday to walk and it felt like Transplant all over again, I was dizzy my legs felt like jelly and I could hardly walk, I have to have a sloppy food diet for a while now, but I'm feeling fed up of it already haha! I'm going home tomorrow but decided not to go back to college until next week as i'm in quite a lot of pain where they did the keyholes to. 

A picture of what a Fundoplication is 

I'm back up at GOSH again in about 2 weeks for another lot of Antibody-Mediated Treatment, I will have this every month for a few months to hopefully say goodbye to these Antibodies! 

As always, thank you for reading

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Disneyland Paris!!!!

Hey!

i'm back from Disneyland! it was AMAZING, absolutely AMAZING! i loved every second of it, the journey there and back wasn't great but it was all worth it! when we got there it was quite warm, but on Thursday when we went into the parks it was freezing! i had a photo with minnie mouse and got hers, mickeys and queen of hearts signature, i didn't go on many rides because of my piccline and didn't want to risk it and plus it was too cold! i went on one ride and it was probably the scariest ride I've been on because i don't go on many rides haha! Olivia said she was going to watch so she saw us on the ride at the beginning and she saw my face and she couldn't stop laughing when i got off because my face was apparently very funny! :P i loved the parade, seeing all the characters was lovely and i got some photos too so i will post some :) i bought quite a lot of stuff and getting it into my suitcase when we left was hard work haha, we stayed in hotel cheyenne and it was a nice hotel! i went with college but i stayed with my friends the whole time, we had 2 rooms but there was a door in the middle so we could go in each others rooms, they made it the best holiday I've been on, there is never a dull moment when i'm with them, so many laughs! it started to snow when we were there too but not enough so it would set. I would love to go back to Disneyland one day and i will! but i have it off my bucket list, i am so happy i got to on this adventure with my friends with me and because of my donor <3 

I go up to GOSH Tuesday night for my Antibody-Mediated Rejection treatment and then should come home Thursday and then go back up for my fundoplication on the 19th Feb!  

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The Beautiful Harriet Sheehan

Hey guys!

I know I said I was going to do a blog post after Disneyland but today the CF community had some very bad news that Harriet Sheehan passed away this morning, she was the kindest person i knew, she would do anything for anyone even though she was battling with CF, she was in hospital since june last year trying to battle against CF! before Harriet died she had a wish to meet one direction and it came true, which i was super jealous about but I was so happy it came true for her, she was one amazing girl, everyone with CF is amazing and strong and if I didn't have CF then I wouldn't be the person I am today. We are all so lucky, I'm lucky because I had my second chance, Harriet couldn't get on the transplant list because of reasons. We are lucky to be here with our families, some people take life for granted and they don't realise just how lucky they are just to breathe. Harriet was too young to be taken away from us all. I will never forget when i would walk past her hospital room when we were in the same hospital and see that big smile she would give me and say hello! I am thinking of her mum, dad and little sister at this sad time. Harriet is no longer fighting and can breathe easy, Rest In Peace beautiful xxxx

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Transplant clinic 28/01/15

Hey!

I had transplant clinic at Great Ormand Street yesterday and it went okay, rather good actually little bad news but.. lung function has gone up a little bit to 68% which is good, around a week ago it was just about coming up from 50% and weight has gone up! I'm on 20mg of pred now but still eating anything I see so my cheeks are like hamster cheeks! when I was discharged from GOSH 2 weeks ago they did a blood test to test my antibodies and the results came back positive for Antibody-mediated rejection in my lungs, so I'm going back to GOSH on the 9th February to start treatment for it, i'm still allowed to go disneyland next Tuesday which i am soooo excited for!!! I am feeling much better then I was when I was in GOSH and my walking has got a lot better, I'm still getting out of breath a little bit walking like up stairs and hills but most people get out of breath doing them haha! 

I will talk to you all after disneyland because of course i'm going to do a blog post about it!!

As always, thank you for reading

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Goodbye 2014

Hello!!

2014 was the year i started to live a normal life again, despite going into hospital a few times because of lung problems, it was still a great year. 

• I did my GCSE exams which wasn't easy because i missed nearly 2 years of school
• I left school
• I went to my school prom which i never thought would happen
• I went to see ONE DIRECTION!
• I went to Butlins with my family
• I was 1 year post Double Lung Transplant thanks to my organ donor
• I had my 16th birthday and party- 2 years ago i didn't think i would be here for my 16th birthday
• I went to Hungary with my dad for a week! 
• I met some great friends thats I've always spoke to online (Faith, Jess, Emily & David, Charlotte, Victoria and Vanessa)
• I've made amazing friends from college that i can call my best friends 

These things might not be a great big deal for some people but for me it is amazing! i say this a lot but i only did all those things because an organ donor saved my life! their parents/carers said YES to organ donation. loosing someone you love is the hardest thing that could happen but knowing that they saved someone else's life is a great thing! i will always be happy with my life no matter what happens and will never ever forget my donor. 

sign up and do the right thing, organ donation saves lives: CLICK HERE!

Update: the methylpred seems to have worked its magic and now i am on 60mg of prednisolone for a week and gradually bringing it down(i'm still eating loads!) my lung function has gone up to 64% which means i am going home tomorrow! after 4 weeks of being in hospital i am actually allowed home! i will be coming back up to GOSH on the 28th January for a quick check up before i go to DISNEY!!!! and i have my fundoplication on the 19th February! i am sooooo happy!! :)

As always, thank you for reading

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